Posted by Beatcancer27 on Nov 7, 2019 5:57 am
A little bit about myself: I'm pregnant with my first baby, first grandchild for my mom. I live about one hour away from my parents. Parents need a lot of assistance with navigating health care system due to language barriers. My mom's diagnosis of metastasized ovarian cancer came as shock because she seemed healthy with no serious symptoms.
Posted by Brighty on Nov 7, 2019 7:24 am
Posted by Cynthia Mac on Nov 8, 2019 8:30 am
Congratulations on becoming a parent for the first time. I suspect your new addition will help you answer some of those questions you have about dealing with your mom and your emotions!
My best advice for dealing with emotional matters is to look into mindfulness techniques - deep breathing, meditation, that sort of thing - and exercise. I find that on days I’m able to get out for a long walk, I get a better sleep and I fall asleep better, too. I can provide recommendations to that end if you need.
For your parents’ language barrier, are you able to interpret? Perhaps if you can be on speaker phone and can interpret for your mom and her doctor when they are meeting it will do several things: help the doctor communicate with your mom, give your parents better information in “real time,” and give YOU a more compete picture of what is going on with your mom. (I’ll warn you, though, as a caregiver myself, you don’t always want to hear what the doctor has to say. But, I also know that sometimes it’s better to know than not know.)
Write in any time. You’ve found a good place to be.
Posted by Lacey_adminCCS on Nov 8, 2019 11:05 am
What you described makes perfect sense. I can relate. When my Dad was sick how he was feeling on a given day definitely impacted how I felt that day. I can't imagine the added barrier your family faces around language. Our Cancer Information Service has interpreters available to join the call so our team can give information and support to your parents. They can be reached toll free at 1-888-939-3333. I encourage you to give it a try and talk to your parents about it. They may be interested in the chance to call and ask some questions and speak in their first language.
Are interpreters providing support at he hospital at appointments? This would take some stress off of you. It would be tough as their daughter to have to be the one giving challenging news or direction I imagine. Contact the Social Worker at the hospital to see if this would be possible.
Who is supporting you right now? I hope you will add us to the list.
Posted by Beatcancer27 on Nov 14, 2019 11:44 am
As for parents' language barrier, my brother and I have been accompanying them to their appointments to interpret for them. Our phone numbers are also given to the hospital to contact us so we can relay messages to parents. We know the hospital may provide an interpreter rather than children interpreting for parents but we worry that having to schedule a third party may delay mom's appointments. I also prefer to know first hand what my mom's treatment will be and how she will be taken care of.
Lacey_adminCCS, is the toll free number for requesting interpreters at the hospital? or can parents call to just discuss about resources available to them? Are they counsellors?
My parents experienced difficulties when they wanted to reach a pharmacist at the hospital. My dad called the nursing line and asked for so and so but the person must not have understood what my dad was saying and kept transferring him to other people. It was a rough day for them. They were frustrated that they couldn't communicate a simple "May I speak to so and so." The pharmacist eventually called them so it was okay. They try hard not to be a burden but they are helpless when there is language barrier. Hospital language can be more medical and technical as well. A lot of helpful information, pamphlets, guides and other resources are not available in their native language so I try to translate these materials for them.
Posted by Cynthia Mac on Nov 15, 2019 7:39 am
Posted by Majorqt75 on Dec 6, 2019 9:52 am
Posted by ACH2015 on Dec 6, 2019 10:03 am
The answer is simple. You are not wrong to be worried about your own health. How can anyone be a caregiver if you're not looking after yourself? You can't my friend.
Its a tough place to be, first dealing with your mothers needs, and now trying to get yourself assessed to determine what's going on with yourself.
Taking Care of Yourself is an excellent resource from the Canadian Cancer Society. It offers (like many of us here will) ways and means to cope with being a caregiver, and reinforces the need to look after yourself, This is especially important given your own medical assessment needs.
Find others here and elsewhere to talk with (I call it Communotherapy), seek out and use diversions, to help find and maintain the balance you need to keep everything from building up to a breaking point.
I hope this helps.
Posted by Cynthia Mac on Dec 7, 2019 8:15 am
First, you are not wrong to be concerned about your own health over your mother’s. The most important responsibility a caregiver has is to look after yourself, because if you “fall into disrepair,” you can’t give care. It’s like they say on planes, “put on your oxygen mask before you help another person put on theirs.”
Your emotions seem to be running very high, and with some reasonable cause. However, as you’ve discovered, that emotional distress can work against you - your mom is coming out with some “snappy comebacks,” and I’ve no doubt you’re having trouble focussing on much of anything right now.
You say your “dr and gyno won’t deal with it,” and you “couldn’t even get in to see the gyno.” But you also say you’ve been referred to a cancer specialist, so how did you get the referral? There are three truths here: 1. Your GP isn’t qualified to “deal with it.” Once he knows it’s a, b, or c, his job is to refer you to another doctor. 2. If your gyno is so busy you couldn’t get an appointment in that amount of time, there’s a probability that things will move faster for you with the referral to the other specialist. 3. By referring you to the cancer specialist, you’re by-passing “the middle man” (your gynaecologist).
I know you feel the sense of urgency right now with regard to the cyst, however, it takes time to process referrals. You mentioned that you found out “in October” and we’re still in the first week of December. Did your doctor’s office say when your appointment with the specialist is?
There are things you CAN do right now. Contact your GP regarding the pain and the fever. If you have a fever, you could have a viral infection, and in that case, you should not be around your mom when she is in active treatment, so I encourage you to get that checked out right away.
You can take some steps to try to stop the negative thoughts that are swirling around about yourself and your mom. In all seriousness, when you feel your emotions starting to escalate, put your hand over your heart, close your eyes, and take 10 deep breaths. Every time your mind starts to worry about the pain in your abdomen, or “what’s going on inside my belly,” pause and ask yourself, “what do I know for sure?” Some days, this doesn’t work, but for every time it does, you’ve scored an emotional win. Another thing you can do is to look into mindfulness techniques - deep breathing, meditation, that sort of thing - and exercise. I find that on days I’m able to get out for a long walk, I get a better sleep and I fall asleep better, too.
Now. About your Mom:
Is your Mom not eating or drinking again, or still? You said back in September that she wasn’t eating or drinking much, so if this is an ongoing issue, she will have lost a fair bit of weight by now, I would think.
Was she able to get on Ibrance?
How are you managing with the level of care she requires? Has your brother come to see your mom?
Is her medical team aware of the level of her depression? Since we last spoke, my Dad had some issues crop up in that regard, and it reached a point where he had a bad fall and injured himself before I learned how bad it was. After the fall, we made an appointment with his GP, and made some adjustments to two of his medications. Within the first week, I could see an improvement in his mood, slight, but definitely detectable. He also had a long talk at his next oncology appointment, and was offered counselling services. Your Mom showed signs of depression back in late September, when you first posted, as well, so you might want to advocate for her with her doctors.
To sum up, you are not being ridiculous, you are right to be concerned about your own health, and there are things you can do to try and keep those concerns from overtaking your day-to-day activities.
Posted by AC2019 on Dec 11, 2019 6:12 pm
my mom just got diagnosed with stage 4 metastatic cancer. We are still waiting on the biopsy results but already the prognosis is really poor. Her pain is so bad even with a lot of morphine. She barely eats and lies on the couch all day. Since this happened two weeks ago I have so much anxiety. I can barely eat or sleep. I have two young kids as well so it’s been very stressful. I have no siblings or other family here except my husband and his elderly parents. I feel so exhausted and overwhelmed. Everyone is telling me I have to be strong for her but all I want to do is cry. I feel like the worst caregiver. The waiting is killing me. The doctor mentioned that even if we see an oncologist we probably won’t have any treatment until the new year. I feel like she is just wasting away and I can’t do anything to help her 😞 They are suspecting ovarian primary but it’s alrady all over her liver, adrenal glands and lungs. I just feel hopeless 😞
Posted by Essjay on Dec 11, 2019 10:42 pm
please take care of yourself. To be a good carer you need to take care of yourself first. Your Moms team will have access to counsellors for her, as well as you, your wife and your children if they need some help processing what is going on.Taking Care of Yourself is an excellent resource from the Canadian Cancer Society. It offers (like many of us here will) ways and means to cope with being a caregiver, and reinforces the need to look after yourself.
There are a few folks here experienced in caring for those dying of cancer Brighty Cynthia Mac WestCoastSailor who will be able to give advice from their experiences.
Please don’t feel you have to be ‘strong’. All you need to do is be there. Be with her, listen, talk, and make memories.
Any time you need to talk there’s likely someone who will respond on here - we are here for you.
Best wishes Essjay xx
Posted by Cynthia Mac on Dec 12, 2019 10:58 am
I want to offer you Caregiver tip # 1: take care of yourself. We use a couple of analogies to illustrate this - you can’t give someone water when your own glass is empty, and the airlines remind us on every flight to put on our own oxygen mask before we help another person put on theirs. Already, you’ve learned that when you don’t eat or sleep, your effectiveness deteriorates.
Caregiver tip # 2 is it’s ok to cry. Crying can help us shed some of the anxiety, and it can tire us out so we can get the rest we need to recharge for the next day. I suggest that you find a place of isolation, and let some of that frustration out. It might be in the car, or the bathroom after the kids are asleep, but I encourage you to allow yourself that.
The waiting can perhaps be the hardest part of this whole process. Things tend to speed up a lot once a treatment plan is in place, and we have a sense that something proactive is happening.
I have a few questions, if I may:
Is your mom not eating or sleeping because of the pain or because of the news? The two could be inter-related.
Do you have a good daycare/ after school care support for your kids?
Are your husband’s parents able to help you with your children, or even coming to sit with your mom for a few moments while you step out for a cry, or groceries?
Is your husband being supportive through this?
You mention you have no siblings or family here, but do you have them elsewhere, and are they able to come help?
Do you have a regular “me time” event in your life like a yoga class or book club? If so, try to keep those dates - they’ll go a long way to your self-care.
Do you have access to an employee assistance program, through your own or your husband’s work? They can get you counselling for your anxiety, as can your local cancer centre.
Please contact your mom’s doctor about the pain issue. Pain management can go a long way to the well-being of your “patient.”
Your mom’s case sounds serious, so I have no doubt that her case will be referred as quickly as possible. Things get a little crazy in the scheduling of treatments around Christmas - my Dad’s next chemo has been pushed out a week, because his next regular treatment would have been on Christmas Day, and in order to avoid having him placed in “overflow,” the doctor moved his next treatment to Jan. 2.
For your own anxiety, try to calm it down by telling yourself only what you know for sure. It might also help for you to put a hand over your heart, close your eyes and take ten deep, cleansing breaths - sounds silly, but it can be effective, and every time it is, you’ve scored an emotional win.
Thank you again for reaching out. Please be kind to yourself as you go through this.
Posted by Brighty on Dec 12, 2019 4:08 pm
Posted by WestCoastSailor on Dec 13, 2019 12:56 am
Feel the feels.
I'm a guy. So all my life I'm told "Don't cry." But you know what? Crying cleanses the soul and strengthens us for what lies ahead. Crying acknowledges all the pain and hurt. It gives physical outlet to pent up emotion.
Somewhere we have gotten emotion and feelings mixed up with something we can control. And we can't manage emotions. You feel what you feel. Pick up the feelings, examine them, look at the underlying thoughts. Now those thoughts you can do something about. Is there fear? Is there anger, resentment? Is there disbelief?
I told the story of my meltdown with my wife over here. We got past that and if a death can be described as beautiful she had it. Hope comes from where you create it. Cynthia Mac and Brighty have given some good advice.
I suspect that when the oncologist and palliative team get together, the pain will be managed and hope will be restored.
Stay in touch.
Posted by Sipsi on Dec 16, 2019 11:35 am
I just read a thread of notes over on ‘It’s been a while - checking in for lung cancer patients’
I really feel for justDwilldo and appreciate every word of the support written up by Cynthia Mac and Brighty.
What it did for me was being a whole lot of emotions to the surface, and I just teared up.
I am so frightened that this will happen to me......
Those two black spots that Dr watch could suddenly make that happen anytime......
Do I carry on as normal? Do I hurry up and be more insistent to do the thing I want to rather than acquiesce to others - and live compromising all the time....
I am a strong personality for sure, but am compliant where I see things work to the greater good.
So I stuff all those thoughts in a box and ignore them and carry on as usual.....
Posted by Cynthia Mac on Dec 16, 2019 1:45 pm
Those two black spots your doctor is watching could also turn out to be scarring from an old bout of bronchitis. It is so very easy for our mind to go directly to the “dark place” instead of a “light place.”
I think the best thing to do (since I have yet to figure out what “normal” is) is to live our best life. That will look different for different people. For some, it will be taking a course on hospice care and volunteering. For others, it could be taking as many “bucket list” trips as one can cram into one’s remaining days, and for another, it might be just spending as much time as possible with the grandkids.
Sure, compromise is going to be part of that. I had a friend text me today about a dinner I had forgotten to put into my calendar. My cold is at the “snorty” stage, and I really don’t feel like having company tonight, but I’m making the compromise. I enjoy her company, and we’ll have a good chat, but I’m “sucking up” my feelings in favour of a visit I don’t feel up for.
If you CAN move things ahead, like a significant trip, it might be the thing to do, but if not, it can stay as something you have to look forward to.
It’s uncommon for me to advocate for stuffing “thoughts in a box and ignor[ing] them” - to me, we are better off when we deal with them, process them, and then “stuff them away.” Processing them and dealing with them tends to make them smaller, and less likely to come back and bite us down the road! Ymmv (your mileage may vary!)
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